Help

I am struggling to cope with our daughter and we are going to get her tested for autism

[My4angels]

Hi, I'm sorry to hear you're struggling. How old is your daughter?

[Hidden in reply to My4angels]

She is 7 years old and she has hypotonia Ataxia Convergent squint Server global development delay lack of balance. She is in a wheelchair and has a kaye walker

[anothermother]

I’m sorry you’re struggling. How old is your daughter?

While you’re waiting to have her evaluated, if you’re able to describe some of the behaviors that are most challenging, maybe we can help you try to understand what her body is trying to communicate.

Or you might try using the STAR approach. It stands for Setting, Trigger, Action, Response. There’s much more about it here: pdasociety.org.uk/life-with...

Also, my husband and I found Dr. Ross Greene’s explanation of challenging behaviors as lagging skills very helpful, and Dr. Mona Delahooke’s books on what neuroscience and psychology can teach us about the brain-body connection further helped us learn to look differently at our autistic and ND kids’ behavior (as well as our own—I’m an autistic PDAer and my husband suspects he’s autistic as well).

We have also learned so much from the podcast Two Sides of the Spectrum. The creator/host is a neurotypical OT but she interviews lots of actually autistic professionals, researchers, activists etc, and it’s just full of phenomenal information and suggestions that are just super helpful for parents or anyone who cares for autistic (and ND) folx.

It certainly helps us to know what kind of puzzle we’re working on (ie identifying our loved ones as autistic or ADHD or sensory processing differences etc), but there’s likely so much you already know about the unique nature of your daughter’s individual needs. And the more you learn, the closer you’ll get to narrowing in on the most helpful solutions (eg developing a personalized sensory diet, recognizing triggers, figuring out what accommodations are needed etc).

Hang in there!

[Bee-bop in reply to anothermother]

Just wanted to say your PDA link was really helpful to me

[anothermother in reply to Bee-bop]

I’m so glad! 💛

[Bee-bop in reply to anothermother]

Just been on "quite the ride" with my daughter's final major project where her distress was very high. PDA makes sense but, no one has ever mentioned it to me before. I just saw her being overwhelmed as well, her just being overwhelmed. We are looking at possible PMDD (pre menstrual dysphoric disorder) as her overwhelm appears cyclic in nature. We all had Covid back in March and her energy levels never quite made it back to where they were (same as her sister) and she feels this time her overwhelm is worse but, as we have been on this path many times and she says that every time, I didn't see it like that. So, your comment came at a time where it really helped!

[Hidden]

That is ok and I am here to talk